Wednesday, January 14, 2015

The Roller Coaster

Yesterday was one of those days where you go from extreme to extreme. Elation to depression, in a matter of seconds. That's fairly typical for a cancer parent.

Two days ago, it had been fairly clear that we'd be discharged either yesterday or today. So yesterday morning, I told the doctor who did rounds that Adi's brother was having a birthday party yesterday afternoon, so we really wanted him to be at home, and ultimately she agreed that instead of a day in hospital with no antibiotics (that is, just for observation), she'd let us go home. But she couldn't possibly remove his PICC-line, because, "What if he needs it?"

"You realize it's about to come out on its own, right?"

"If you want to go home today, I'm not removing the PICC-line."

I said fine. And then I went upstairs to oncology to tell our doctor and have him remove the line, because, DUH. Anyway, I was in a great mood when I got upstairs, and then I saw my friend who told me that she was waiting for bone marrow results for her son, and she'd been a wreck, especially after what happened to T, another child on the ward.

"How is T?" I asked, and she looked at me.

"You didn't know?"

"I mean, I know he relapsed, but I..."

"Saturday night," she said, and it was like a kick in the stomach. Again. Again. Again. Because T. was a kid who was ALIVE. Who was ALWAYS talking, always running around, always smiling, always laughing. Always kind, always going.

"I thought you knew," my friend said helplessly, and I couldn't make my mouth say all the words inside me, and I think I said something, but all I could think was, "I need my husband. I need Guy," because it hurt so much in that instant, and in the middle of being so happy and excited that Adi was going home, I just wanted to curl up on the floor and cry.

And the oncologist took out Adi's PICC-line, because DUH, and we went home, and Yoni had an amazing birthday party and Guy broke the Internet in our house and Adi was home and everything was great and I couldn't stop smiling at the party and when Mambo Number 5 came on, I danced(because DUH), much to the embarrassment of my children, and everything was wonderful, and then I remembered and it was like a kick in the stomach. Again.

And this is how it is. Because as happy as we are, there is always a tiny screaming terror in the back somewhere that we can ignore a lot of the time, maybe even most of the time, but it's there, and it's waiting, just waiting, to kick me in the stomach. Again.


isf said...


My version of what you said: Working at the Arizona Oncology Foundation is good for me; it marks me as a survivor; it is a way of giving back and saying thank you to the folks who helped save my life.I advise patients about the very symptoms I still struggle with --neuropathy, fatigue, etc and hey, I'm an expert. I meet and help newly diagnosed patients select wigs or other less glamorous supplies. But I also meet people with recurrences or totally new unrelated cancers. Living with fear makes me enjoy whatever I can enjoy and adds fervor to my prayers.

Crystal T. said...

YES. I know that feeling well. And every time I hear about another kid who lost the battle, I worry all over again about Jack. I worry that, despite the fact that he is lively and so very HERE, he could just be GONE at any time. And there is nothing I can do.